Dialysis Patient Citizens (DPC) is an organization wholly committed to advocating for the rights and well-being of dialysis patients across the United States. Through their efforts, DPC has given a voice to those who need it the most and has made a significant impact on the lives of individuals navigating the challenges of kidney disease.
While the Northwest Kidney Council has worked with DPC on legislative efforts – like Washington’s SB 5177 this year ensuring organ transport vehicles can use lights and sirens – we wanted to know more about the organization’s history and the stories behind their mission.
So, we recently sat down with board member Adrian Miller.
Adrian, a dedicated board member of DPC, hails from Portland and has been involved with the organization for more than two years. His passion for advocating for dialysis patients stems from a deeply personal experience.
Like many, Adrian’s diagnosis of kidney failure was unexpected.
“The Monday after the Super Bowl I woke up and I wasn’t feeling good,” he recounts. “I thought ‘I'm just hungover.’ But prior to that, I had been really sick, and I hadn't been feeling well and my skin was turning kind of a grayish color. And I was throwing up a lot. So anyways, something clicked in my head is like ‘you need to go to emergency.’ That night I started dialysis.”
Adrian underwent six and a half years of dialysis before receiving a kidney transplant. During that time, he also survived a heart attack and stroke.
His journey to becoming a board member of DPC began when his in-clinic social worker suggested he apply for a chance to advocate for certain bills in Washington, DC. His initial reluctance turned into determination after his eye-opening visit to the nation's capital, meeting with members of the House and Senate.
DPC's mission of focusing on kidney care and dialysis patient well-being resonated deeply with Adrian. Unlike other organizations that address various aspects of kidney health, DPC prioritizes advocacy efforts to address the specific needs of dialysis patients. As such, its agenda is set by a Board consisting entirely of ESRD patients. DPC was also established as a 501 (c)(4) social welfare organization, to ensure there are no limits on its ability to help elevate the patient voice.
Adrian has witnessed the hardships faced by patients in in-center dialysis clinics and believes that DPC's focus on at-home dialysis options is crucial. Many patients, especially those living in remote areas, struggle to access proper care, and DPC's advocacy is a beacon of hope for them.
“I've seen the worst of the worst,” Adrian said. “You see people that will get taken away in an ambulance, and you'll never see them again. Things like that just get to me. So, I wanted to start fighting for those people. Some people will never have a transplant, they're going to be hooked to a machine to be kept alive. I wanted to make sure there was a voice for those people.”
One of the biggest challenges faced by individuals with kidney disease is managing their health effectively. Kidneys are vital organs that perform essential functions, and maintaining them requires a thorough understanding of renal diets and the impact of various substances on kidney function.
Adrian acknowledges that adhering to a renal diet can be challenging, especially for those with cultural dietary habits that may not align with kidney-friendly guidelines. Adrian's journey highlights the importance of education and support for patients as they navigate the complexities of kidney disease management.
“Anyone that says they follow the renal diet to a T is telling you a lie because it's next to impossible to do,” he said. “Learning the ins and outs of what you're supposed to do and not supposed to do, was the biggest learning curve for me. I'm Hispanic, so giving up certain foods, especially Mexican food, that I had grown up on, was the hardest part.”
As a board member of DPC, Adrian is deeply committed to advocating for crucial policy changes. One of the primary issues he is passionate about is the Living Donor Protection Act, which aims to provide protection and support to living donors. As a fortunate recipient of a deceased donor kidney, he knows the significance of living donors in saving lives, and ensuring their well-being is essential to encourage more people to consider donating. Additionally, DPC is currently fighting against Medicare's proposed funding cuts to dialysis units, which would have severe implications for patients' access to quality care.
Adrian's inspiring message to those currently undergoing dialysis or about to start treatment is that kidney disease is not a death sentence. While it is challenging, he emphasizes the importance of making the most of life and staying determined to follow the recommended guidelines as closely as possible. He also encourages patients to consider exercise if their health allows, as it can have a positive impact on their overall well-being.
“If you're on dialysis or getting ready to go on, it's not a death sentence. Follow the directions as close as you can. It's impossible to do it from A to Z in a straight line, but you're not given a death sentence. You're still alive and make the most of it.”
Dialysis Patient Citizens, through the dedication of board members like Adrian Miller, is making a significant impact on the lives of dialysis patients. By focusing on the unique challenges faced by this community, DPC stands as a powerful advocate for their rights, ensuring that their voices are heard and their needs are met. As they continue to fight for important policy changes, DPC remains an essential organization in the kidney health landscape, inspiring hope and positive change for dialysis patients across the nation.